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I can't believe this, do I am idiot ?

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  • privateuser
    started a topic I can't believe this, do I am idiot ?

    I can't believe this, do I am idiot ?

    Today I had the report of the PARTIAL orchiectomy: Mixed germ tumor: 95% embryonal carcinoma, mature teratoma 5%, size 1.6 cm x 1.2 cm.
    Stage pT1 nX M0,

    two years ago I had a TOTAL orchiectomy in my left, and it was a seminoma with retetestis invasion, two sessions of chemo carboplatin with weeks of distance.

    This is what the oncologist says:

    You have to do radiotherapy: and now what worries me: means i will lose testosterone. And now I am asking me: to do this thing, is the same to have a total orchiectomy with a prosthesis, than a died testicle...
    This, by words of the oncologist: it is for two reasons: to stop the 80, 90% of a new tumor and to stop a potential ''maybe possible'' tumor inguinal (lymphatic??) ganglions.
    Guys, I need your opinions and help again please, a lot of you, are an expert, and I need a professional than can give me other options.
    I want my testicle and testosterone, I don't want this thing guys.
    Maybe other DR can have another plan.


    thank you a lot

  • Trekga
    replied
    JAKESMOM~ So sorry for your loss for your loss. You are correct that Bleo should not have been used., So sorry they did not withhold Bleo.

    Leave a comment:


  • JakesMom
    replied
    First and third were seminoma/teratoma. The one at age 22 was a germ cell tumor. I know his oncologist had in his medical records, that he had a history of asthma, because i was there for the first two bouts. the last one, he wanted to 'handle on his own'. in his honor, that is why in part i joined here, because no young man should EVER do this on their own. no one person with any type of cancer should be alone. For some reason, that stigma of 'mannin up' carries over into this? nope. wrong answer.

    Leave a comment:


  • Davepet
    replied
    Originally posted by JakesMom View Post
    My Son Battled Testicular Cancer at age 18,22 and 24. He didnt make it. He passed 7/3/16.
    Somehow I missed that you were new here, JakesMom. So sorry your son lost his battle & more than a little PO'd that it wasn't the cancer that did him in, but the treatment. If his asthma was on his record, there is no excuse for giving him bleo, IMHO. Did they do a lung function test prior to treatment?

    Also you indicate he had TC at 18, 22, & 24. Were the last two recurrences from the first or was one a new primary? Not that it really matters, but we tend to be a bit curious about these things , you never know which tidbit of info might prove useful in the future.

    Dave

    Leave a comment:


  • Chemin
    replied
    I'm so sorry to hear he had Bleo toxicity. You are correct. A history of respiratory issues should have been offered EP x 4. Before my son had his BEP x 3, he had to have a pulmonary function test to check his lungs and breathing. And he never had a history of respiratory issues.It is very disheartening to hear this and there's nothing I can say but I am truly sorry you and your family went through this.

    Leave a comment:


  • JakesMom
    replied
    at stage two B. He was type one diabetic, and had a respiratory history. His last round was Bleomycin. He drove himself on memorial day for his check up, and had a pleural effusion and fluid around the lungs. They sent him home. No observation, no nothing.....I didnt know any of this until after he was diagnosed with Bleomycin Toxicity, then Alveolitis-but Bleo should never be given to anyone that has had hx of asthma, which my son did. The doctors that performed an ECMO and various other heroic efforts, tipped me off that there was an "agent" that could have stopped the Bleomycin from attacking his lungs.... I looked at the Mayo Clinics site, and confirmed just that. Actually, a different triad of chemo should have been given to him, but it is more expensive....and by then, he was on Medicaid. Guess they wanted to get home for the rest of the holiday.

    Leave a comment:


  • Chemin
    replied
    I'm so sorry for your loss. Truly heartbreaking. I hope you don't mind me asking, but what stage was he when diagnosed?

    Leave a comment:


  • JakesMom
    replied
    My Son Battled Testicular Cancer at age 18,22 and 24. He didnt make it. He passed 7/3/16. My advice, is to get a second opinion,and a third, if need be. Not certain where you reside, but seek the best center possible, and NOT a research facility! Also, I would check into if there were a big shift in personnel, because that- I believe played a part in him passing. Should I have been able to foresee any of this, that would be my suggestion. But not to delay!

    Leave a comment:


  • hinear
    replied
    Originally posted by Joe.shupe22 View Post
    You'll need to be properly staged before doing any treatment. Chest, abdomen and pelvic ct scan and tumor markers should be done next. In any case I would highly advise against radiation with the high percentage of embryonal. It is quick to spread elsewhere and radiation may be a wasted treatment.
    Agree, high percentage of EC should treat with BEP chemotherapy instead of radiation.

    Leave a comment:


  • hinear
    replied
    Originally posted by privateuser View Post
    Today I had the report of the PARTIAL orchiectomy: Mixed germ tumor: 95% embryonal carcinoma, mature teratoma 5%, size 1.6 cm x 1.2 cm.
    Stage pT1 nX M0,

    two years ago I had a TOTAL orchiectomy in my left, and it was a seminoma with retetestis invasion, two sessions of chemo carboplatin with weeks of distance.

    This is what the oncologist says:

    You have to do radiotherapy: and now what worries me: means i will lose testosterone. And now I am asking me: to do this thing, is the same to have a total orchiectomy with a prosthesis, than a died testicle...
    This, by words of the oncologist: it is for two reasons: to stop the 80, 90% of a new tumor and to stop a potential ''maybe possible'' tumor inguinal (lymphatic??) ganglions.
    Guys, I need your opinions and help again please, a lot of you, are an expert, and I need a professional than can give me other options.
    I want my testicle and testosterone, I don't want this thing guys.
    Maybe other DR can have another plan.


    thank you a lot


    I have I/O for my right testis one month ago.it is 100% embryonal carcinoma. At the same time my left testis also has a 6mm suspected tumor. The doctor did not allow me to do a partial orchiectomy. How come you can do a PARTIAL Orchiectomy?

    Currently my doctor suggest me to wait and see the left testis. If the tumor size increased from 6mm to 1cm, he would recommend me to do 2 cycles of BEP cheomotherapy. Although the drug of BEP is hard to be absorbed by the testis, it can control the tumor size. It may make tumor disappear.

    Leave a comment:


  • privateuser
    replied
    Originally posted by Davepet View Post
    I do know that radiation can kill sperm production, which is why they shield them even with dental xrays, but I cannot recall reading anything about T production. Does anyone have good info on that?

    Dave

    Dave my oncologist said you won't have T, and Lawrence H. said if is in a low dos a 40% won't need, but i don't know if he refers from the testicle

    Leave a comment:


  • Davepet
    replied
    I do know that radiation can kill sperm production, which is why they shield them even with dental xrays, but I cannot recall reading anything about T production. Does anyone have good info on that?

    Dave

    Leave a comment:


  • DoubleZero
    replied
    Private'
    Like others say, TRT works. I've been on it for almost 7 years now (lost second in March 2010), and can happily say that everything works as normal. Unlike biwi, I've been on daily gel treatment since day one. And no negative issues to report at all.

    Leave a comment:


  • biwi
    replied
    Testosterone treatment might sound scary but it really isn't that big of a deal. Many of us are on it. I'm on injections, I pretty much forget all about TC and my testosterone levels for months at a time. My injections are every 10 weeks.

    Leave a comment:


  • Joe.shupe22
    replied
    You'll need to be properly staged before doing any treatment. Chest, abdomen and pelvic ct scan and tumor markers should be done next. In any case I would highly advise against radiation with the high percentage of embryonal. It is quick to spread elsewhere and radiation may be a wasted treatment.

    Leave a comment:

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